Monday, May 30, 2011

We have just reached the point where Kirstin can no longer stay alone while I am at work. (This is Andee - the infamous "A," her roommate, writing.)

For those of you who may not be up-to-date with the latest--the pain from the "strained ligament" in her left knee turned out in fact to be from another melanoma metastasis in her left tibia. The various pain meds she has been given, while not helping much with the pain, have made her loopy, nauseous or both. She had been able to hobble from the bed to the bathroom with the aid of a walker, but Friday night, the pain meds made her lose her balance. She caught herself before falling, but simply putting weight on that leg fractured the front of that bone.

I haven't had an uninterrupted night's sleep in weeks, and am exhausted. Although I have some vacation time remaining, I'm trying to save that for the times I need to accompany Kirstin to doctor's appointments. Family leave laws don't apply when you are the primary caregiver to a roommate instead of a close relative.

To all of you who have wondered how you can help: HELP!!!!

We desperately need people who can just quietly be here daytimes on weekdays; having someone here for a few hours on Saturday so I can run errands would also be helpful. If you're local and can come for a day (or even half a day) every week, that would be wonderful. If you're from out of state and can come help out for a few days, or a week or more, that too would be marvelous.

You might need to bring her something from the kitchen when she asks, remember when she is due for more meds, or wheel her the few feet from the bed to bathroom. (The wheelchair is super-lightweight; the only tricky part is negotiating some tight doorways and corners without bumping her injured leg.) And I'll be honest, until we get the pain meds/nausea stuff worked out, there might be an occasion when you have to rinse out the basin. (To give her credit--although I'm sure this isn't something she wants to be known for--Kirstin is the neatest, most odorless vomiter I've ever met!) Between the pain and the anti-pain drugs, she's not up to much socializing. So most of the time, you'll just be occupying yourself in another room, just available in case of need. (There's a computer, wi-fi, a ton of books, and three cats to keep you amused, but no cable TV.)

We hope, and pray, that this is temporary. There is still one more treatment for melanoma to be tried; a very small percentage of those who go through it are helped by it. There is a very great chance (and I'm crying as I write this) that I'm asking you to be prepared to help with end of life care.

Many of our friends have asked if Kirstin needs money. The answer is yes, no, maybe and probably. Neither medical insurance nor hospice covers this kind of in-home care - at most they provide an aide a few hours a week. If we can't find enough friends who can help and need to hire aides, or if the friends who have time are unemployed and can only come if we cover their travel and lodging expenses, then yes, she is going to need lots of money. If you can help cover some of these expenses (and thank you, Lisa and Neil for offering air miles!), or contribute towards other medical costs not covered by insurance, please, please write to Andee.

(For that matter, if you're in the Stockton/Lodi area, do you have a guest room that you'd be willing to make available to friends who are traveling from out of state to help us? Or if you're going to be out of town for part of the next few months, could they borrow your house, if needed? My house is tiny - Kirstin's in the bedroom, I'm sleeping in the living room.)

Other ways you can help--

Handyman skills: I really need to get my front sprinkler systems working again, because I don't have time while taking care of Kirstin to water by hand. (I think the valves just got clogged with dirt when the city repaired the sidewalk a few months ago. At any rate, I hope that's all it is.) We may also have to remove a couple of inside doors and the shower doors temporarily to make it easier for her to move from room to room, and get into the bathtub. If/when we have to bring in a hospital bed, I'll need to put up curtains in the living room, and will need a place to store some furniture (and strong arms/backs to help move it).

Gardening: This will make the second summer in a row that melanoma has taken precedence over gardening. The weeds (and unwanted zillions of baby oak trees) aren't tall - but they are plentiful. If that's your thing, have at it!

And of course prayers, love, emails, tears, hugs. What's sustaining us through this is knowing how many of you are with us. I love you all.

My offering in this time is carecalendar.org. You can set up a care calendar there for all to see when you need help, what kind, etc. This site was very useful when my friend needed assistance last year. It's just a shared calendar, really, but it brings people together as they wonder how to help. Blessings to you as you care for Kirstin, and much love to you both.

Paypal is an excellent way to accept donations. e-mail me if you want assistance setting up a site where people can donate via Paypal - You maybe able to do this via FB too - Many Blessings to you both ~

THis is hard to read, and I'm sure harder to write. I've forgotten where in CA you live. Address please? If you'd rather not post it, my email is ohdelta2@comcast.net.Not sure how I can help, but I'll find a way. Life shouldn't be so hard... I admire your spunk and generous love.

I could come for a day or two initially, maybe set up something regular after that. We're moving from Milpitas to Fremont this week. Contact Fr. Jonathan for a reference if you like; my email address is absaichek2@gmail.com.

Andee, Kristin,We haven't met yet, but I'm a member of St. Laika's at OCICBW, and link to your blog through that one. In the physical world I'm a member of St. James' Episcopal Church in Fremont. I moved to CA a few months ago, am semi-retired and newly married - that's a story that might take Kristin's mind off things for a while! I would consider this service to you a part of St. Laika's ministry. Gardening is one of my strengths and passions, although I'm pretty good at quiet companionship as well. I could read the daily office to Kristin if she'd like that.

Prayers for you both, and all the people who rally with the practical help I so wish I could give. We've never met face-to-face; just consider me part of the "great cloud" holding you in love. (Crying's part of the loving.)